I would never want to burden down someone with being a caregiver for me.

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Over the last 15 years I've been a care giver for my elderly father who had dementia until he passed away a few years ago and I'm the sole care giver for my elderly mother who has dementia. Father God has been most kind to me blessing me mentally and physically for all of these years.

During this experience in care giving for my parents I must say that if I ever could not care for myself, that I would never want to be a burden upon my child or anyone else. I would rather die with dignity than being a demented shell of my former self ripping off diapers or throwing body waste at the walls. I say this because my elderly mother does just that. I spend so many early morning hours greeted with the smells of urine or solid waste as I try cleaning it off her and off the bed or wall where she sometimes throws it.

I just would never want to be such a burden on others. Am I the only one here at Aging care.com that feels this way?

36 Comments

I too feel the same way. I have been the full-time (24/7) care giver for my father and mother since 2008. Dad passed in 2011 and now I only tend mother. I am fortunate that she does not sling her bodily substances about the room. She has dementia and other problems and is on Hospice care at this time. I tend her 24/7. I don't want to burden my child or loved ones with my daily care. I have asked that if and when the time comes that I can no longer care for myself, I be placed in an assisted living or total care giving facility. I only ask of my loved ones that they come to see me and, to the best of their ability, see to it that I am not ABUSED as I have heard so many horror stories throughout the years. I ultimately desire to not have to go to a facility but to just pass away, in my sleep. But with Jack Kavorkian now gone, who will I be able to call on?
Rainesage: No, you are not the only one. I suspect we all feel that way. You have my great respect for giving care to two parents, fifteen plus years. I am going into my third year with my mom and physically caring for her is not the issue, yet. I have said all my life that I do not want to do to my children what my mom has done to me mentally/emotionally for sixty-four years. Perhaps this is satan's last effort to snag my soul. God help me, he certainly has a shot at it. I don't ever want my kids to feel this way about me.
pdehaven: I certainly understand.
No, you are definitely not. My Living Will states that all my medications are to be stopped immediately if diagnosed with dementia/Alzheimer's in addition to any other terminal illness. It's a living death. I also do not agree with people who think the person who is diagnosed shouldn't be told. They should be able to make the choice of how to handle it themselves. It's cruel to force someone out of their ignorance to endure this living death. I have heard of patient/doctor confidentiality, but that does not mean the doctor should be able to withhold diagnoses from his patients. It makes me so angry. Have you considered a nursing home for your mother? Any loving parent in their right mind would not want their child to be in your position. You only get one life.
fordellcastle: Well put.
No you are not the only person to feel this way- I do and so do many others. Years ago, I attended a training seminar, regarding long term care insurance,that was very powerful and left a lasting impression. It was conducted by a elderly law attorney whom is considered an expert in elderly estate planning. He is a strong advocate for long term care insurance as he had seen many families and children's lives destroyed (emotionally, physically, financially, spiritually ) as a result of long term care obligations. He shared horrific stories, similar to many on these posts. Overwhelming caregiving situations, children fighting, children going bankrupt as a result of not working because of caregiving obiligations, total lack of concern for caregiviers and their lives. He was also divorced and had extreme dislike for his ex but he was voluntarily paying for long term care insurance for his ex because he did not want his children's lives to be "ruined". Now that is a statement.

Your situation sounds horrific and I am sorry that you are in this situation . Who would ever want to be such a burden on others especially their children. Have you ever thought that you have done everything possible for your mother and it may be time to consider alternative caregiving arrangements?. (My Dad is now in a nursing home, yes their are some good ones out there, where trained professsionals are caring for his needs. I took care of my Dad as long as I could but being at home is no longer a safe and viable option.) I hope this post
RaineSage: You are not alone in feeling this way. In the four years of caring for my mom with Alzheimers and dementia, I often thought how I could avoid making my two children responsible for caring for me in my later years. One step I highly recommend is planning for old age financially, including purchasing Long Term Care Insurance. I practically drained all of my financial resources caring for my mom, since she (like many of her generation) did not plan to live 30+ years beyond retirement. Also, keep your will up to date as well as a power of attorney. Also, be specific about what medical care you do and do not want as you get older. We never know what the future will hold, but we can plan as best we can. My financial advisor tells me that women of my age (57) can plan to live to 97!
i would rather die than be anything like my mother. in fact my sister and i have a pact. if either of us gets this way, we are to take the other out to the mountains on a cold and snowy night hike, get drunk together, leave the other with a nice bottle of Krakin rum and walk away. drunken hypothermia is a very pleasant way to go. trust me, i know, and yes i am perfectly serious. i don't know if she'll have the courage to do it for me, but i know she'll tell me if i'm off my rocker and i DO have the courage to do it for myself. i refuse to burden my kids.
Rainesage, bless you for so many years of caregiving:). I also take care of my Mom who is in late stage AD and have discussed this with my adult children who do not want us in a NH either. I have sometimes cried and said I do NOT want this to happen to them, to be stuck with me!!! I tell them to put me away!! We have seen the lack of care from caretakers I hire just to go out, and a NH is even worse by far. Its a lot of work to find a good caregiver!! We have learned from this experience. Due to our strong close family relationship, the best thing to do is to sell all assets and use that for our care at home. For example, I sold moms assets and used it for her to have the best of care from myself and a cna I chose. After over 31/2 years of myself doing it fulltime, I hired a weekend person and I try to now consider my loving mom a "fulltime job" with weekends off which makes it so much more do able. But, caregivers call in sick often, arent as good, and I live with guilt when I go out, but I HAVE to do it, or I will crack .I still do the morning bathing, etc, but its still a nice break to go out . My Mom was the most independent person on earth and asked me to please shoot her if she ever cuoldnt live alone, we had more laughs over it, and yet what happens, she comes down with dementia! (of all people!) I could never put her in a NH and although its hard work and we are tied down, when she gives me a laugh and a glimpse of the old her comes thru, its all worth it. As severe as she is, she still knows how to Kiss when I ask her for one, shes precious and if we cannot afford long term health insurance, we do have homes, etc, that our families can sell. At home care is best, no matter what anyone wants to think, its a lonely disease and it means the world to them to just have us hold their hand and sing to them. If our kids see this, how can they put us in a NH, they cant, they are nurtured from watching what we do, so no matter we say, they more than likely will do what we do, keep up the good work.
PS throwing feces, making meatballs, etc, I hear is common in NH's before the medicate them. My Mom used to get up , drop her pants and pee on the floor. There IS medication to calm their brain (depakote) so please call your dr. I went thru a year of Hell and no sleep also, wasnt worth it when there are meds. If they go to a NH they will medicate them so why not do it at home. Believe it or not, they are happier ON drugs then off them, they dont want to be the way they are either, they just cannnot help it, as you know I am sure..

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